Friday, February 11, 2011


Supreme box camera
Image by al_dekleine via Flickr

I've found that Multiple Sclerosis can become an all-consuming obsession to those suffering from it. Or, to be more precise, to this person suffering from it. Between coping with the marching progression of the disease itself, keeping up with doctor’s appointments and phone consultations, dealing with insurance companies and disability issues, searching for and reading the latest and greatest in MS research news, and tracking the ever-growing conflict being waged over CCSVI, MS can commandeer not only your body and your mind, but your time as well. I'm always preaching about not letting MS define you, and I thought I'd made a pretty good effort at avoiding that trap, but it occurs to me that the pile of unanswered e-mails, the growing number of phone calls that need to be returned, the stack of books and magazines I'm always just about to get to, and the dozens of unwatched shows on my DVR (almost all about archaeology, World War II, mythical creatures, UFOs, or quantum physics) would loudly argue otherwise.

Sometimes it's imperative to just tear yourself away from the addictive gravity of the MS universe, and lose yourself in something else. Family, friends, and loved ones are always a nice distraction (I'm making a crass understatement here), and the football Giants and baseball Red Sox deserve rapt attention. I also have one other passion that I can get entirely immersed in, and it's something that Multiple Sclerosis stole from me, but then, completely unexpectedly, gave back.

Before getting sick, I spent a lot of time on photography. I caught the photo bug early in my teenage years, and then later got a degree in Film. That degree led to a career in television and video production, and when I started out in "the biz" I could very often be found with my eye pressed hard against the viewfinder of a pro video camera, shooting all kinds of cool stuff. I wound up taking video from a sensational variety of flying machines, including hot-air balloons, the Goodyear blimp (three times!), police helicopters, tiny airplanes, and even once from a vintage World War II B-17 bomber. I shot minor-league baseball games and alligators in the Everglades. As my career advanced, I moved from cameraman to video editor to producer, playing with and manipulating images all along the way. Eventually, though, I wound up being a boss, and by necessity dealt more with clients and the good people working in my department than with the images themselves.

To make up for the lack of picture taking and making in my professional life, I went back to snapping away in my private life. This was right around the time when digital photography started to really take hold, and, unlike when I was a kid, when cameras used film, which meant relying on photo processors and darkrooms, suddenly you could do everything photographic all by yourself. The magic of Photoshop puts an entire darkroom in your computer, right at your fingertips. The camera became my constant companion, and all of those years spent looking at and working with images professionally left me with a pretty good eye. I won a few online photo contests, and happily became an active amateur photographer. I've always been drawn to the past, and even in the digital age I found myself becoming fascinated with antique cameras that use good old fashioned film, and with cheap plastic toy cameras that make images that feel like they were snatched from a dream.

Here are a few photos I took back in my healthy days. The square ones were taken with toy and/or vintage cameras. Click each thumbnail for a larger image:

And then I got sick. A slight limp in my right leg soon evolved into weakness in my entire right side, which is quite inconvenient for a right-handed person. To my utter dismay, within only a few years I could no longer hold a camera to my eye, or push a shutter button. MS had stolen photography from me, and in the early years of my disease this was just about the greatest loss the disease meted out. I could still work, could still walk (with increasing difficulty), and, with adjustments, could still live a semblance of my old life. I even learned how to use chopsticks left-handed. But, although I tried, taking photos soon proved to be impossible. Attempting to operate the controls of a camera while framing a shot one-handed was extremely difficult, especially since that one hand was very often frantically reaching for something to grab, and eventually was needed to hold a cane.

Thanks to the aggressiveness of my disease, a shiny new set of wheels soon became part of my life. Not the Porsche roadster I'd always dreamed of, but a Quantum Q6000Z power wheelchair. After some initial trepidation, I became quite fond of the electric beast, which suddenly expanded the size of my world from my 850 ft.² apartment to the 20 or so miles the chair will go until the batteries give out. I know it's almost verboten to say, but I actually found driving the thing to be, well, fun. I could zoom past pedestrians on city streets, explore the many nooks and crannies of Central Park, and cruise along the trail next to the Hudson. Pretty good, and a big improvement over the pathetic few painful steps I had been reduced to.

My wife Karen soon started suggesting that I figure out a way to rig a camera up to the chair, so that I could start taking pictures again. Being grumpy and contrarian, I always muttered one excuse or another about why such a scheme would never work. I think I was afraid that even if I could figure out how to secure a camera to the chair, the results would suck, and that would make me feel worse than not ever having tried, proving that despite my best efforts I was somehow diminished. Still, Karen kept up the pressure, and I finally gave her the go-ahead to get me the required equipment for Christmas (click here to see set up). After a few test runs, I started noticing that the results weren't all that bad. They were somehow different than my old shots, which were more off-the-cuff and improvisational, but shooting from the chair required me to work within a set of some pretty stringent restrictions, and doing so forced some creative discipline on me.

Almost inevitably, I think the MS experience also changed the nature of my shots. Certainly not in any conscious way, but I now seem to take photos of that are a little bit more contemplative, and some have a kind of turbulent tranquility to them. More thought is put into each shot, an attempt to inject some beauty into a scarred existence.

Though I got very sick this past September, and was out of action until the beginning of November, I did manage to get to Central Park a few times later in the month to capture some autumn scenes. Here are a few of them, along with a couple that I shot this summer (including one of Karen, who gets full blame for this madness). Hope you like them, I'll be adding some of them to the Wheelchair Kamikaze photo gallery on the left side of the page. Click thumbnail for a larger image:

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  1. All of the pictures are great, but the baby face picture really hit me. That's amazing.

  2. The photographs are beautiful. So is your wife. As for "... a kind of turbulent tranquility ..." Very zen, that.


  3. You still have the "eye" for photography Marc. I used to paint, but I can't do that anymore, so photography is my new medium. I have a lot to learn, but I am enjoying my new diversion.

  4. I just closed up shop a year ago. My MS symptoms are not as visible, but a progressing hand tremor and bad cognitive symptoms have made it harder and harder to work as I used to. I haven't gotten myself to a healthier place with my love of photography yet (still dealing with the grief of closing shop), but thanks for showing it is possible to continue enjoying the passion, even if it takes doing it a bit differently.

  5. Your work is incredible! Thank you for reframing a major loss into something exceptional.

  6. Lovely work. I am thrilled you found a work around to continue to share your talent.

  7. Marc,
    You really are an amazingly gifted artist. I am always impressed with your words, but I am now equally blow away by your keen eye, and talent for capturing beautiful images on film.

    Thank Karen for me for pushing you to take up the camera again. Your talent is very special and makes this reader and looker very happy!


  8. your couples shot is incredible! words & photography are def your calling. I used to enjoy cooking, but I don't think there are that many folks that like fingertips mixed in with their fresh salsa! still trying to find that special niche for myself...but I so enjoy your writings! kim

  9. Your shots are amazing and you have a great eye! when I am feeling good, I like to work with video. It is a great feeling and distraction to make something creative. Whether it is good or bad, I enjoy it and it uses my brain in a different way. Thank you for sharing your pictures with us, keep them coming!

  10. You know, this reminds me of my life before MS- I had a passion for horses, training and riding. A few years ago, when my symptoms got worse, I gave up altogether. I don't want to start at the very beginning again, being led around a ring on an old nag....but I do miss the horses. Thank you for sharing your feelings with the world.

  11. Marc, I spent 30 years in the film/video business, starting as a director/cameraman and editor. As the business grew I hired staff and spent more and more time working with clients and less actually shooting. I got out of the business to go sailing but then MS cut that short. My limitations will never allow me the physical ability to be a shooter again, but recently I was invited to edit a low-budget movie. I have to say that editing the movie has allowed me the creative outlet that I have been missing. As always, your blogs ring so very true to me.


  12. Beautiful pictures Marc!! I am a scrapbooker, one of those crazy people who blog on paper!! I'm glad you can still do something you love.
    I'm in a relapse at the moment and off work for a while. Copaxone is failing me and I hope Albany calls soon.
    Take Care, Joanne

  13. Marc,
    I’ve always enjoyed your non-MS posts the most and this one is no exception. You are indeed a beautiful and talented person in so many ways. Please don’t let MS take that away from you or us ever.


    P S – Karen is beautiful.

  14. I agree that it can become easy to pour too much of your time and focus into the "ms universe" and that it's so important to have hobbies, even if MS changes them, as in your case.

    Before and after the MS, your photos are magnificent. I look forward to seeing more of your work in the future!

  15. Matt-thanks, that baby is my little cousin, now six years old. That was one of the last photos I was able to take before having to put down my cameras…

    Judy-thank you, and Karen thanks you as well. Is "turbulent tranquility" Zen, or just an oxymoron? I guess it all depends on your point of view, and how you're feeling at a particular moment…

    Karen-I'm glad that you picked up a new diversion, but sorry that you had to give up painting. I'm sure much of what you have learned as a painter will carry over to your photographic work. Color, composition, mood. Try not to get too caught up in the technicals of photography, you'll learn that in time. But also, don't rely on the auto functions that are so prominent on modern cameras, at least too much. Shutter speeds and lens apertures are your new brushes…

    Erin-very sorry that you had to close up shop. I too well know the feeling. Hoping that you will find some diversion to take its place. As you said, it may be just a question of learning to adapt. Easier said than done, I know…

    Carmen-thank you for your compliment. And thanks to my wife for forcing me to "reframe".

    Marie-thanks for your kind words.

    Nicole-how nice it is to be able to make people happy. I've never understood those who take delight in doing just the opposite…

    Duke-peace and light, right back at you…

    Kim-I don't know, a little Fingertips salsa might really liven up a party! Certainly would provide a unique way to "break the ice". "Hey, there's a pinky on my chip!" Keep trying, I'm sure you'll find your niche…

  16. Andrea-not only is being creative a great distraction, but using your brain may help it to get some rewiring done, and could conceivably help it overcome some of the deficits caused by MS. Working with the video is great fun, and if any of your stuff makes it to YouTube, please send me a link…

    Anonymous-perhaps just going to the stable and being around horses might make you feel better. I know you're probably afraid that it will make you feel worse, because it will bring into focus just how much MS has cost you, but that's the way I felt about trying to take photographs from a camera attached to my wheelchair, too. I'm sure the horses would enjoy an apple or two, and maybe you'll find that getting up on an old nag and being led around the ring isn't such a bad thing, after all. You may even surprise yourself and find that you're more able than you think to handle yourself on a horse. Not that you'll be competing in equestrian events, but I bet once back in the saddle, you might find that some of the old instincts kick back in. And if not, then at least you'll have given it a shot. Nobody can fault you for trying.

    Capt.-sounds like our stories are quite similar. Congratulations on editing the movie, and finding a way to channel your creative instincts. It seems that the reality of the disease almost shocks us into forgetting who we are, and we need to fight to rediscover ourselves. The disease may mangle our bodies and dull our minds, but the essence of a person it cannot touch. I hope this editing job is only the first of many that you will take on…

    Carl-thank you!

    JoAnne-I'm glad you like my photos, and believe it or not, I've only recently learned of scrap booking. Sounds like something that can become a family heirloom for generations to come. Sorry to hear that Copaxone is failing you, and I too hope that you hear from Albany very soon. Waiting is hard, but keep telling yourself that the longer you have to wait, the more experience the Dr. will have when he works on you, and that can only work to your advantage.

    Charlie-thanks for your incredibly generous words. Hopefully, MS will decide to give me a break one of these days. Or the world of medicine will finally come through. I'm not giving up the fight anytime soon. And thanks on behalf of my wife, who is beautiful inside and out.

    Kayla-yes, the MS universe is easy to get lost in. Every now and then you have to come up for air. Thanks for the kind words about my photos, and if you haven't seen it before, there is a gallery of them available in the left column of the blog.

  17. You have an eye for beauty. These are all stunning photos, but the kissing babies really are a standout. You're a great inspiration to a lot of people.